Amy Erhart Cunningham is a heart warrior born with hypoplastic left heart syndrome (HLHS) in 1983. She has had two surgeries, a BTT shunt and Fontan, and has struggled with arrhythmias. She has been very active in the CHD community. 

Prior to the pandemic, she raised over $20,000 for the 1 in 100 Heart Walk. From 2020-2023, her fundraising efforts slowed, however in 2023, she created Putt-Around Kalida with her sister and friend, raising $20,000 in the first year to donate to multiple non-profits and services for children with CHD. But Amy's work for the CHD community didn't end there. In 2024, she started her podcast, “Diaries of a Heart Warrior.”

Anna Jaworski is an author and the owner of Baby Hearts Press. Baby Hearts Press (BHP) provides resources to the congenital heart defect CHD community. Anna's first book was Hypoplastic Left Heart Syndrome: A Handbook for Parents. Her first children's book is My Brother Needs an Operation, and the first anthology she edited was The Heart of a Mother. Subsequently, BHP published The Heart of a Father and The Heart of a Heart Warrior. In 2023, BHP converted to a hybrid publisher and assisted Emily Falcon and Laura Redfern in publishing their books.

Ben Johnson is a 45-year-old CHD Survivor who has Tetralogy of Fallot. Ben had one corrective surgery at 4 years of age in 1983 and has been living a healthy life ever since.  He runs his own pet sitting and dog walking business in Kenosha, Wisconsin where he grew up. Ben has a degree in Music Education from the University of Wisconsin – Whitewater and enjoys lifting weights and working out.

Dr. Dawn Ilardi, a board-certified clinical neuropsychologist with 16+ years of experience helping children with neurodevelopmental disorders. She specialized in cardiac neurodevelopment at Children's Healthcare of Atlanta, focusing on families with complex congenital heart conditions.

As part of the Cardiac Neurodevelopmental Program and the CNOC collaborative, Dr. Ilardi researches the long-term neurological effects of pediatric heart disease and frequently speaks at professional and family events. Now in private practice, she provides personalized strategies to support children with heart conditions, helping them reach their full potential through a family-centered approach.

Dr. Paul Grossfeld is a renowned pediatric cardiologist and researcher specializing in congenital heart defects. A professor of pediatrics at UC San Diego, he leads a research lab focused on genetic mechanisms underlying conditions such as Hypoplastic Left Heart Syndrome. Dr. Grossfeld has authored chapters in five medical books and received grants from the National Institutes of Health (or NIH) and the American Heart Association for his research. Over the past 25 years, he has been invited to speak at prestigious international conferences, sharing his expertise worldwide. Additionally, Dr. Grossfeld served as the medical leader for annual cardiac surgical missions to the Angkor Hospital for Children in Siem Reap, Cambodia from 2006 to 2015, demonstrating his commitment to global health initiatives. He has also served as a cardiology consultant for the United States Olympic Volleyball program for the past 14 years.

Dr. Timothy Nelson directs the Todd and Karen Wanek Family Program for hypoplastic left heart syndrome at Mayo Clinic. His research focuses on cardiovascular regeneration using bioengineered stem cells to treat degenerative diseases, particularly HLHS.

As director of the program, Dr. Nelson and his team are specifically interested in the cause of HLHS and finding ways to delay and prevent heart failure for individuals with HLHS. To better understand and treat this congenital heart disease, the program has taken a multifaceted approach that includes research into stem cells, genetics, imaging tools, and the creation of a biorepository.

Emily Falcon was born in 1982 and at 7 weeks of age she had a heart attack that destroyed 40% of the left side of her heart. She was born with a condition known as ALCAPA — anomalous origin of the left coronary artery from the pulmonary artery. Emily has had 2 open-heart surgeries — one at age 6 and another at age 35. The second surgery provided Emily with a quality of life she never could have dreamed of. 

Emily has written a memoir about her experiences of growing up with a congenital heart defect and other medical conditions that prevented her from having the quality of life she dreamed of. In her memoir, From the Sidelines to the Finish Line, she shares how her condition made her feel different, but how she has persevered and how her last surgery totally changed her life.

Erin Borkowski is Bella's mom, who was diagnosed with HLHS at 20 weeks. Bella, now 11, has undergone all three scheduled surgeries. Erin's family created the nonprofit "Beats for Bella" and she now works with Dr. Nelson at HeartWorks.

Bella has undergone all three scheduled surgeries and is now 11 years old. Erin and her family created a nonprofit organization called Beats for Bella. Additionally, Erin is working with Dr. Nelson at HeartWorks. She is here today to share with us what she’s doing to help the nonprofit organization.

First full-time Executive Director for Global Alliance Rheumatic and Congenital Hearts (Global ARCH), a nonprofit organization improving worldwide outcomes in childhood-onset heart disease by empowering patient and family organizations, Kate holds a Bachelor of Science in Public Health from the University of Massachusetts Amherst and studied abroad at the Universitat Autonoma de Barcelona.

With experience in data registries, program management, and international global health, Kate has worked to improve outcomes for those living with childhood-onset heart conditions. Her most impactful role was managing the International Quality Improvement Collaborative for Congenital Heart Disease (IQIC) at Boston Children's Hospital, where she collaborated with healthcare centers specializing in congenital heart disease (CHD) and rheumatic heart disease (RHD) worldwide.

Global ARCH, founded in 2017, has grown from 21 countries to a thriving global network of leaders.

Marina was born in Switzerland in 1986 with tricuspid atresia and a ventricular septal defect (VSD). At the age of 11 months, she had her only heart surgery, a modified Fontan procedure. In 2018, she also had an ablation.

After working in hotels and then in the financial industry, she found the perfect job – working for atHeart Medical. This company aims to develop a device to treat atrial septal defects (ASDs).

Marina feels fortunate to have a meaningful life helping others with congenital heart disease. In her free time, she is passionate about traveling the world.

Rachael Gott is an adult who was born in 1988 with HLHS. She to date hasn’t had any major corrective heart surgeries. She currently has had 13 cardiac ablations, along with two device implants. Rachael is an advocate in the heart community and is passionate in helping others on their own CHD journeys.

Regina is Aubrey Lawrence's mother. Aubrey was born with DiGeorge syndrome which is also known as 22q11.2 deletion syndrome. Regina is also a volunteer with Hearts Unite the Globe, the nonprofit organization that supports podcasts for the CHD community. Regina works on The CHC Podcast: Congenital Heart Conversations. 

https://tinyurl.com/CHCPodcastApple

As the mother of a 22-year-old son with tetralogy of Fallot, Sara Bonneau has navigated the complexities of congenital heart disease (CHD). Her son has had two open-heart surgeries, a catheterization, and a sternal wire repair. Despite these challenges, he excelled as a competitive high school basketball player. 

The tragic on-court death of a fellow 15-year-old athlete from sudden cardiac arrest motivated her to advocate for legislative change in Rhode Island. Her efforts were instrumental in mandating Automated External Defibrillators (AEDs) in all middle and high school gyms, enhancing emergency preparedness. 

Recognizing the emotional toll of being a CHD parent, she actively shares her experiences to destigmatize mental health support within the CHD community. Her transparency about personal treatment and medication aims to foster a supportive environment for parents facing similar journeys.